Anyone with C6-T1 avulsion at spinal cord

[ndpsrp]

My 21 year old daughter suffered her injury Jan 14/06. Avulsion at the spinal cord for C6, 7, 8 & T1 is the diagnosis from an entire battery of tests. C5 has extensive damage as well. She has complete paralysis for the entire right arm and part of her shoulder. Exploratory surgery is scheduled for mid May. The surgeons are looking at possibly restoring some function to the scapular and bicep muscles. I have only been able to find limited information on avulsion at the spinal cord. Most information seems to deal with BPI occurring at birth or TBPI that has not resulted in avulsions at the spinal cord. Help!!!

[jennyb]

Hi there
There are plenty of us here with multiple avulsions, I'm sorry to say. Ask anything you need to.
One question I have-if the tests show multiple avulsions in your daughter's case, why are they waiting until May for exploratory? Avulsions won't mend with time, it's more usual now for them to go in as soon as possible. Some of the posters here have had quite a good degree of recovery with 5 avulsions, hopefully Ellen will post here about her son John who has had some great progress.
Keep us posted as to what happens. I was 21 when I got my injury, it certainly changed my life....
JenNZ

[ndpsrp]

Thanx,

As the extent of my daughter's injury is uncommon at least up here in Alberta it is a releif to find others who know what it is like to have her type of injury.
At this point in time my daughter is quite reasonably rather devastated and depressed. Like most people her age she just wants it fixed. Is there any iformation available on-line or that she could read that would better explain her injury, reconstruction and prognosis that is easily understandable. Her doctors are wonderful but tend to explain in medical terms that she is having trouble with. I have tried to explain what I understand but am limited in medical knowledge to give her complete answers. It also doesn't help when well-meaning people ask her why can't they fix it. Anything we could use would be a help.

[EllenB]

Hi Sharon,

There have been a couple people from Canada who have posted on here so hopefully you can connect with them at some point. I don't remember where they live, unfortunately.

I'm the "Ellen" mentioned earlier, and my teenage son John did have all five bpi nerves avulsed three years ago when he was hit by a car while cycling. He had a couple major surgeries at the Mayo Clinic in Rochester MN, that have been both written up in a couple formats & also the second surgery was filmed by Discovery Health Channel for a special they were doing on Mayo. I'll send you the pdf files of articles from work tomorrow, and you can see if that helps 'splain it in English as opposed to Medicalish. And if at some point you want me to send you the DVD of the surgery, I'm happy to do so - it might help show the surgical options available at Mayo.

It is a LOT to try to figure out - and trust me, we've all been there. Most of us had never even heard of a bp injury and next thing we knew, we were trying to become experts overnight.

You didn't mention your daughter's pain levels - and I'll hope that's because perhaps she isn't suffering from neurological pain to the degree some people do. But if she is, it would be advisable to get her to a pain specialist for treatment. Different people seem to do best with very different "recipes" of meds & dosages, so the more experienced specialist you can find, the faster she might get some relief.

Just a word of encouragement here: it will get better. John's surgeries were three years ago, and he has movement & functionality in his injured arm that never would have been possible without the surgery. Not only that, he's completely off the massive dosages of pain meds he had been on the first couple years. This board will be a tremendous help to you because no matter what your question, somebody out here will have an answer.

I'll shut up now! Take care & know you're not alone.

Ellen

[admin]

C6 to T1 were completely avulsed at the spinal cord. No hope there at this time. They want to do more EMG's etc for C5. And isn't 3 months post trauma the usual time frame. Al least that is what we were told and what I have been able to discern from my research.

[admin]

Please do send me the pdf files. I'm extremely grateful for anything I can get.

Te last couple of weeks have not been too bad as to pain levels. Fortunately one of the first things she was directed to was a pain specialist. To date the recipe of medications is quite effective. In that respect she has been one of the lucky ones.

Glad this place exists. I don't even know anyone who knows anyone whose TBPI resulted in avulsions at the spinal cord. Lots of severed nerves etc but not where C6 to T1 were completely avulsed at the spinal cord.

Thanx again

[EllenB]

Hi Sharon,

I just sent the articles to you. And you're correct - on this side of the pond the doctors want to wait ~ 3 months so see if nerves will heal on their own. Then they prefer to do surgery within 3 - 6 months after injury, before muscle atrophy becomes too much of an issue.

One thing that is frequently done to hold atrophy at bay is called electrical stimulation, or e-stim. John had that done during PT sessions but also had a little battery-operated unit at home. He'd "zap" his muscles, causing them to contract - and continued this until the transferred nerves from surgery were able to grow out to the target muscles. Since nerves grow ~ 1 inch a month, this can take awhile.

Take care,

Ellen

[jennyb]

Hi again
About the timeframe thing...yes, I'm talking mainly about papers I've read from Europe, especially London. The view is, since avulsions can't possibly heal by themselves, there is no need to wait any time at all, most bpi docs accept that the sooner the grafts are done, the better the result. I know of people whose nerve grafts have been done before they even came round from the accident! It may be that the different health sytem you guys have prevents this being done-they need to make sure the insurance will pay up before they do anything, could that be it? I have read papers by US tbpi docs saying that surgery should be done asap if avulsions are suspected, so maybe some docs do things differently. A lot of the doctors in the US have a main interest of obpi (birth injured babies) and as multiple avulsions are not as common in that group, waiting is the usual protocol, maybe those docs just do the same for tbpi as well.

Ellen, could you ask the Mayo docs next time you see them why they wait 3 months, I'd be very interested. After all, waiting couldn't help at all with avulsions, so why do it?

All the best with things, anyway. I know at least one tbpi in Canada, he has avulsions at the cord too. There are quite a few of us about! I'll give him a nudge, I think he used to see a doctor in London, Ontario. :0)
Jen NZ

[EllenB]

Hey Jen - you're right, the "wait & see" attitude is prevalent here in the US. I will check w/Mayo, though - good question. I do remember that it took 2.5 months for us just to get past John's other injuries, researching/understanding bpi (once we confirmed that was the problem), researching doctors, making appointments, travel & lodging arrangements...and then finally getting to Mayo, the first of the three appointments we'd made at different clinics. All that to say, I'm not sure logistics would have allowed anything much sooner!

One thing I have suggested to newly injured people, although I'm not sure if anyone has applied it - but that is with the longer & longer waitlists at the more highly respected bpi clinics, I encourage people to go ahead & ask for an appointment right away. At least that way, something is locked in while the other details get worked out.

Ellen

[STravis]

I have avulsions at C5,6,7,8 and T1 on the right side that were sustained in a motorcycle accident in September 2001. You are correct that three months is the appropriate time frame for the first exploratory surgery. My first surgery was in December 2001 and at that time a nerve graft was done to “re-energize” my biceps. Unfortunately that was all that could be done as the “root avulsions” can not be repaired. Also the results of that surgery are not immediate since a nerve only grows about 1mm per day and the nerve they used was 36cm long it took about a year but I now have elbow flexion. Since that first surgery, I have had “Arthodesis” (fusing my shoulder together to eliminate the need for a sling) in April 2002 as well as the “DREZ Procedure” (spinal cord surgery to aid with pain) in December 2004.

This is a devastating injury that can result in depression and anxiety. I went through cycles of depression, anger, and anxiety for a couple of years. I found that small achievements would give me strength to cope with the pain and deal with adapting to the loss of my dominant arm. Learning to write, tying my shoes, riding a bike and many other very small tasks seemed like huge achievements and helped me cope. At the time of my accident, I was only four months away from completing my MBA and although I was on medical leave from work, there was no restriction on attending classes to complete my education. I only missed one class in the last four months which allowed me to keep my mind occupied and stay very focused. Even though, I was dealing with a crushed vertebra, and a TBPI, I made sure that I focused on the education task. I am convinced that having the education work to focus on is what allowed me to keep my sanity during this period.

By February 2002 I was cleared to return to work and I went back with a vengeance. I have found that It is important to pour yourself into whatever you are doing in a huge way and keep you mind as occupied as possible to aid in pain management. During the next two years, I took copious amounts of all of the drugs you will see listed on this message board to alleviate a pain that I could not explain. All I wanted was off the drugs but there was seemingly no way to accomplish a drug free existence with a TBPI. My position was in corporate international business development which required me to travel world wide, conduct meetings, give presentations and make sales and technical customer visits several times a year. The drugs were a serious deterrent to these activities because of adverse affects to my digestive system, memory, attitude, demeanor, and ability to stay alert and focused. What was worse was the fact that they did not have a full affect on the pain. After numerous trips to Europe, Australia and Asia it became apparent that I would have to make a major change in either my work or my pain management regiment. I did both.

I had DREZ (Dorsal Root Entry Zone) surgery in December 2004 in the hope that it would allow me to eliminate the pain medication completely. Although the process was a bit painful and removing three years of drugs from my system complex; by August 2005 I was completely drug free. The pain is still ever present but the severity has decreased to a manageable level with only short bursts of intense pain rather than the constant intensity. Additionally, I moved about 10 hours south to get away from the cold weather in the northern mid-west and took a job in a field that I thoroughly enjoy. The combination of this move coupled with the DREZ surgery has really given me a new lease on life.

The pain is still there and likely always will be to some degree but through the love and support of my family and remaining focused on everything except the pain I have been able to continue and reshape my life around my situation. Make no mistake, this is a life altering injury and coping with the pain has been the most difficult aspect of the entire situation. As your daughter progresses through this period there will be lots of ups and downs and in five years, you and her both will have a whole new vocabulary and an intimate understanding of nerve injuries and pain management techniques.

I hope that by sharing this brief summary of my experience will in some way help you in your effort to understand this injury and aid you and your daughter in your decision making. There are many options, treatments and pain management regiments available and this message board has really helped me when I have had to make tough decisions relating to my treatment.

Good luck with all of the future treatments.